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Ethics and the Participation of Indigenous Children and Young People in Research0

 

Indigenous children and young people’s participation in social research raises a range of ethical issues that researchers and participants must grapple with prior to and throughout the research process. These issues include for example, matters to do with protocols for seeking consent, ensuring the research process is culturally respectful and age appropriate, whether the research environment and methods used are child friendly and participants can freely express their views, and ensuring the research endeavour is mutually beneficial.

In Australia, all research involving Indigenous children and young people must be guided by, and adhere to the principles articulated in the National Statement on Ethical Conduct in Human Research (‘National Statement’), particularly chapter 4.2 of that Statement. If the research is health related it must comply with the National Health and Medical Research Council’s Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (‘NHMRC Values and Ethics Guidelines’). These documents instruct researchers about how to undertake research in an ethically sound manner, and the principles they contain are fundamental to the manner in which Australian ethics committees assess human research applications. Additionally, the Guidelines for Ethical Research in Australian Indigenous Studies (‘AIATSIS Guidelines’) are particularly instructive and helpful and are becoming more widely used by researchers and ethics committees alike.

There is a gap however, in relation to a comprehensive ethical framework for the involvement of Indigenous children and young people in social research. The National Statement communicates the ethical parameters for the involvement of children in research; and the NHMRC Values and Ethics Guidelines and the AIATSIS Guidelines set out a framework for the involvement of Indigenous people in research. The National Statement specifically refers to research relating to children and young people, but does not mention research relating to Indigenous children and young people; and there is no mention of children or young people in either the NHMRC Values and Ethics Guidelines nor the AIATSIS Guidelines. Thus, in Australia there is no single overarching ethical framework that specifically pertains to the involvement of Indigenous children and young people in research. Read together however, these three documents provide a firm basis upon which to develop and assess the breadth of ethical considerations regarding the involvement of Indigenous children and young people in research, particularly when read in conjunction with the Convention on the Rights of the Child (CRC) and the United Nations Declaration on the Rights of Indigenous Peoples (UNDRIP).

There is much to say about the CRC and the UNDRIP in relation to Indigenous children and young people’s participation in research. All research endeavours involving children and young people must uphold the comprehensive body of children’s rights set out in the CRC. These rights are numerous, therefore the task of ensuring compliance with the CRC for child related research may at first instance appear overwhelming for researchers. One vital provision in the CRC is worthy of focused attention. This is the principle articulated in article 12—children’s right to participate in ‘all matters affecting’ them. This is an instructive and appropriate starting point for researchers to base their considerations of how a research process can adhere to children’s rights principles, and in doing so create a child friendly, culturally respectful and age appropriate research environment that reduces risks participants may experience as a result of taking part in the research. Article 12 of the CRC provides that:

States Parties shall assure to the child who is capable of forming his or her own views the right to express those views freely in all matters affecting the child, the views of the child being given due weight in accordance with the age and maturity of the child.

Article 12 aligns well with the ethical considerations specific to children and young people outlined in chapter 4.2 of the National Statement. Article 12 is widely accepted as the ‘lynchpin’ of the CRC, and a foundational right upon which other rights depend and emerge. The Committee responsible for overseeing the global implementation of the CRC makes this clear when they said article 12 ‘establishes not only a right in itself, but should also be considered in the interpretation and implementation of all other rights.’

The language of this provision is strong. Note the use of compelling words such as ‘shall assure’ emphasising children’s right to free expression, and the all-encompassing subject matter to which the provision applies, namely to ‘all matters affecting’ them. These words are emphatic and when they came into force this drastically altered the pre-CRC, and post CRC, rights framework for children globally.

Involving Indigenous children and young people in research processes, particularly by non-Indigenous researchers, must be carried out in accordance with national guidelines, and in a way that upholds participant’s rights as children in accordance with the CRC, as well as their rights as Indigenous peoples in line with the UNDRIP.

In the absence of a comprehensive and unified ethical framework for engaging Indigenous children and young people in research I developed a model and detailed this in my PhD as well as in the Monash University Law Review. This model is a child rights-based approach informed by Indigenous research methodologies that uses child friendly and culturally sensitive research methods: yarning and peer-to-peer video interviewing to engage children and young people in research. This model is based on national ethics guidelines, the provisions set out in the CRC and UNDRIP, and draws on current scholarship in the area. The development of this model contributes to enhancing the ethical framework that regulates and guides the participation of Indigenous children and young people in social research.

References

Australian Institute of Aboriginal and Torres Strait Islander Studies, Guidelines for Ethical Research in Australian Indigenous Studies (2nd revised ed, 2012)

Bessarab, Dawn and Bridget Ng’andu, ‘Yarning About Yarning as a Legitimate Method in Indigenous Research’ (2010) 3(1) Journal of Critical Indigenous Studies 37

Convention on the Rights of the Child opened for signature 20 November 1989, 44 UNTS 25 (entered into force 2 September 1990)

Doel-Mackaway, Holly, ‘“I think it’s Okay … But it’s Racist, it’s Bad Racism”: Aboriginal Children and Young People’s Views about the Intervention’ (2017) 43(1) Monash University Law Review (forthcoming Sept, 2017)

Freeman, Michael, ‘Whither Children: Protection, Participation, Autonomy?’ (1994) 22(3) Manitoba Law Journal 307

National Health and Medical Research Council, the Australian Research Council and the Australian Vice-Chancellors’ Committee, ‘National Statement on Ethical Conduct in Human Research’ (2007, updated December 2013)

National Health and Medical Research Council, Values and Ethics: Guidelines for Ethical Conduct in Aboriginal and Torres Strait Islander Health Research (Commonwealth of Australia, 2003)

UN Committee on the Rights of the Child, General Comment No 12, ‘The Right of the Child to be Heard,’ UN Doc CRC/C/GC/12 (1 July 2009)

United Nations Declaration on the Rights of Indigenous Peoples, GA Res 61/295, UN GAOR, 61st sess, 107th plen mtg, Supp No 49, UN Doc A/RES/61/295 (13 September 2007)

Contributor
Dr Holly Doel-Mackaway | Lecturer | Macquarie Law School | Dr Doel-Mackaway’s Macquarie staff pageholly.doel-mackaway@mq.edu.au

This post may be cited as:
Doel-Mackaway H. (2017, 21 September 2017) Ethics and the Participation of Indigenous Children and Young People in Research Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethics-participation-indigenous-children-young-people-research

Terms and conditions apply0

 

Kids tell us that making decisions can sometimes be hard (anyone who has taken a child to an ice cream shop can attest to this). Adults don’t often give children choices and kids tell us that when they do it can be confusing: ‘what am I being asked?’, ‘can I really say no?’, ‘do they seriously care?’ and ‘what will happen if I make a decision the adult doesn’t like?’ are questions that might spring to mind. After all, they tell us that it’s not usual for adults to seek out children’s views, to let them make big decisions or to give up some of their ‘adult power’ and act on children’s wishes.

And yet children are required to ‘assent’ to research, often with little information about what research actually is and what they will be required to do. In most cases, they know that their parents have already given permission for them to be involved – which may be reassuring but also a bit daunting (how often is it that kids can say ‘no’ when their parents have already said ‘yes’?) – but in most cases a complete stranger comes into their home or schoolroom and pulls out a note pad and asks them whether their happy to answer a few questions. “Um OK?”

Since the Helsinki Declaration there has been an expectation that children provide assent to their participation in research. Often this entails providing them with a long-winded, legalistic and ‘pretty boring’ information letter, telling them that if they agree they might get a movie voucher or at least a packet of chips and a can of soft drink before asking them to tick a box to show that they agree. As a child in one of my studies reported, the process is ‘kinda like’ the terms and conditions process they go through when downloading a new app from i-Tunes. Like 73% of Terms and Conditions non-readers, kids in research often have no idea what they are signing up for and what their rights are when things go wrong.

In a recent study my colleagues and I conducted for the Australian Royal Commission into Institutional Responses to Child Sexual Abuse we got advice from children and young people about how to best help kids understand and consent to participating in research on a fairly sensitive topic. Based on this advice we conceptualized consent as an ongoing process that included six steps: (1) present information in a child-friendly and accessible way; (2) make sure they understand what research is and what they are expected to do; (3) give them the choice to participate (or not) and ask them to formally agree; (4) give them lots of opportunities (and the skills or tools) to bow out of the research (particularly after they’ve got a ‘feel’ for what they are being asked to do) or to change the way that they are participating; (5) be aware of the ways that kids resist or ‘dissent’ (yawning or sneaking out of the room might give it away) and constantly ‘check in’ with them in child-friendly ways (6) Get an agreement with them at the end of the research activity that they are still happy for their input to be included in the study and negotiate what, if anything, they’re happy for the researcher to share with their parent, teacher or older sibling who is standing behind the door.

In the paper “More a marathon than a hurdle: towards children’s consent in a safety study” my colleagues and I outline how we went through these steps with kids, we describe how we used felt toys, ‘stop signs’ and ‘rights posters’ to help children and young people consent and, most importantly, quote advice and feedback from children and young people on how adult researchers might best help kids to make decisions within the research context.

One tool we feature in the article is our “Charter of Rights” poster which we provide kids in our studies. The poster informs them of what they should expect from us, as researchers, and what to do if they are unhappy. The poster is given to the children prior to them meeting with our staff and is further explained before assent is sought. On the advice of children and young people who have advised our projects, the rights charter has also been used as the basis of a series of games and activities that can be used to help children understand their rights in research (and in welfare practice). More detail about these can be found here. My team at the Institute of Child Protection Studies are working with peers from the Centre from Children and Young People (Southern Cross University), UNSW and the University of Melbourne to progress ethical research with children and young people. We’re currently hosting a survey on ethical decision-making – take a minute to fill it in! We’re keen to chat with others who are grappling with how to meaningfully engage kids in research (and support them to make good decisions) and would love to hear from you. *Terms and Conditions Apply.

Contributor
Dr Tim Moore
Senior Research Fellow | Institute of Child Protection Studies, ACU
Bio page at ACUTim.Moore@acu.edu.au

This post may be cited as:
Moore T. (2017, 21 July) Terms and conditions apply; Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/terms-conditions-apply

Building beneficial relationships when conducting research with migrant communities0

 

In my experience, projects that involve working with migrant groups and communities reveal a range of complex issues with regards to ethics and the types of the relationships between the researcher and participants. While acknowledging the importance of formal ethical requirements I also believe that the concept of research ethics has a dynamic nature which means that many dilemmas that will emerge during the study will require an individual approach that does not necessarily fit into set rules. In this context, researchers working with migrant communities may need to think about how they can do this in a way that benefits both sides and reflects well the research situation. One of the dilemmas here is how to balance the pre-designed with the spontaneous elements of this kind of academic research project, thus avoiding an instrumental approach to gathering data that could lack sensitivity to participants’ needs and situations.

One of the ways of thinking about the research process in ethical terms is to approach it by focusing on the following key elements: characteristics of the researcher and his/her social background, characteristics of the researched community, research methods and settings, research aim and wider agenda. What I also found helpful from my experience of conducting small-scale community-based qualitative projects was defining them through the prism of building relationships between the researcher and the participants in which the purpose and boundaries are clearly identified at all stages. While the characteristics of the researcher and his/her social background play an important role in defining their position within the group and should be taken into account, it is also important to consider how s/he wants to define the roles of researched community and engage with the participants. Would the participants be treated as anonymous interviewees, or act as full collaborators? In case of collaboration will their time be acknowledged and/or compensated, and how? How will the benefits from participation be communicated to the community, before, during and after the study?

Thinking and defining participants’ roles within the study can also help to distinguish different levels of formalisations of relationships between the researcher and the participants, for example, in the situation when one collaborates with community leaders and activists (as well as thinking whether it would be useful/appropriate to use them at all). Other factors to consider when identifying types of relationships could refer to levels of vulnerability of the participants in relation to state policies, immigration status, and media attention and, subsequently, in relation to the aim, subject and scope of the conducted research and its place and connection to wider contexts and networks.

The ‘research process as relationships’ approach also helps to acknowledge the dynamic nature of established connections and perceive them as something that can change and continuously develop throughout the study. The level of closeness, trust and involvement can differ at various points of the study depending on the range of individual and social circumstances of all involved parties. If the project allows, spending more time within the community before, during and after the fieldwork and identifying modes of engagement with community at each stage can help to establish positive relationships and ensure that participants benefit from them as much as the researcher. Working within community-based/migrant contexts can require additional levels of flexibility and sensitivity towards people and their lives, their concerns, tensions, experiences and stories. Integrating these complexities into the research process in the way that would benefit all groups involved in the study is an important ethical task. So, one should think how the benefits from participation will be communicated to the community, will the participation be recognised and how, whether any events will be planned after the fieldwork and whether any further opportunities for contribution to the project will be created? Furthermore, the conditions of the study itself can have an impact on time required to establish positive relationships, such as, the location of the interview (at participants’ home, community centre, public space); whether any visual methods are used and which ones (participant or researcher generated photography); number of the interviews or focus-groups, whether additional methods such as observation are used; what and how to be recorded (audio or video); whether researcher approaches the whole families or specific family members; etc.

Certainly, each project has its own unique elements and conditions and there will always be aspects of the study that will only unfold during the fieldwork when researchers are actively engaged with the participants. At the same time, thinking of the value and impact of the study and how researcher-participant relationships can improve it should be as important as designing interview schedules, consent forms, and invitation letters.

Please see the detailed discussion on ethics and positionality when conducting research of migrants’ homemaking practices:

Pechurina, A. (2015) Material Culture, Migrations, and Identities. Chapter 3. Researching Russianness: A Discussion of Methods. London: Palgrave.

Pechurina, A. (2014) Positionality and Ethics in the Qualitative Research of Migrants’ Homes. Sociological Review Online. Vol (19) 1.

Contributor
Dr Anna Pechurina – Leeds Beckett University | Senior Lecturer in Sociology in the School of Social Sciences
Leeds Beckett profile: http://www.leedsbeckett.ac.uk/staff/dr-anna-pechurina/ Personal webpage: http://www.annapechurina.com/
A.Pechurina@leedsbeckett.ac.uk

This post may be cited as:
Pechurina A. (2017, 26 July) Building beneficial relationships when conducting research with migrant communities Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/building-beneficial-relationships-conducting-research-migrant-communities

Ethical Self-Assessment: Excellence in Reflexivity or Corporatisation Gone Mad?0

 

Research ethics and integrity have always been at the forefront of my work, not only because the issues which I explore (self-injury, disability, gender and sexuality) are personal, sensitive and often stigmatised topics, but also because as a disabled, feminist researcher I have first-hand experience of the ways in which power, inequality and appropriation are often enmeshed in research methods and outputs. Conventional ethical protocols which originate in medical guidelines struggle to fully grasp and incorporate such ethical issues, as well as the dilemmas which emerge from social research more broadly. Ethical protocols rarely prompt a researcher to critically examine how issues such as power and marginalisation play out in social research, or even how to address specific issues emerging from their own project, such as how to respond to requests for specific information as in Anne Oakley’s (1981) now infamous research with first time mothers. Ethical review more often consists of tick-box protocols, which ultimately function to restrict who and what can be researched rather than to promote ethical skills, competencies and practices (see Inckle, 2015).

This mismatch between my own ethical sensibilities and the conventions of research ethics were so vast that, during my PhD research, I struggled to conceive how any research could ever be fully ethical and I became stymied with anxiety and doubt (see Inckle, 2007). Happily, since then, I have joined a research ethics committee, taught research methods and ethics, conducted, supervised and even participated in social research. As a result, I have become more reconciled with (although no less sensitive to) the possibilities of research being both an ethical and positive experience for all those involved – albeit when based on a reflexive, ethical sensibilities rather than rigid, pre-defined protocols.

Nonetheless, when I joined my current institution and discovered that ethical review operated on a self-assessment basis http://www.lse.ac.uk/intranet/researchAndDevelopment/researchDivision/policyAndEthics/ethicsGuidanceAndForms.aspx my first response was to laugh, a lot. Isn’t the whole point of ethical review, I chortled, to provide oversight and accountability via external reviewer/s? How does simply completing a self-assessment form ensure ethical competency? Isn’t this just another example of the corporatized university gone mad, where academics take on more and more administrative duties in a role of ever-increasing responsibilities and ever-diminishing autonomy?

However, with time, reflection and some experience – all of which are important ethical competencies! – my perspective on ‘ethical self-assessment’ has radically shifted. Firstly, self-assessment is not really a full description of this ethical review process. Student researchers require formal ethical validation from their supervisor, who acts as a proxy for the institution in granting approval and, in the case of staff research projects, the line-manager takes on this role. Furthermore, in certain situations, such as when required by an external funder or participating body, the researcher is compelled to present their work before a university ethics committee proper.

Secondly, while the ethical ‘self-assessment’ form requires the respondent to answer a number of fairly standard questions about their research project – including, whether deception will be used, are the participants ‘vulnerable’, will sensitive/personal issues be explored – the process nonetheless allows for nuanced and discipline-specific accountability. For example, rather than a ‘yes’ to any of these questions rendering the research unethical and in need of redesign, the researcher is invited to complete another section of the form providing further information which contextualises the project and outlines protective protocols. What is most important, is that these justifications and protections are reviewed in a discipline specific context, thus moving the entire process away from universalised assumptions and locating it within specific field of the researcher. For example, in a medicalised context a non-clinician interviewing those who are defined as ‘vulnerable’ by virtue of their experience of disability and/or self-injury would be considered highly problematic. Similarly, an insider-researcher with shared experience of such a ‘health’ or disability experience would be considered compromised in their role and unable to ‘objectively’ and reliably conduct the research. However, from a social sciences (and rights-based) perspective, using these kind of labels to position certain individuals as compromised and/or inadequate researchers is in itself unethical and discriminatory.

Indeed, ethical ‘self-assessment’ has proven beneficial for my current research regarding the health, identity and social impacts of cycling for people with physical disabilities, including its impacts on their experience of themselves as able/disabled. In a standardised context it is likely that a number of ethical problems would be highlighted with this project: exploring sensitive issues amongst a ‘vulnerable’ group; an insider-researcher (I am a disabled cyclist); and quite possibly the assumption that the topic is so anomalous as to not justify the research at all – it is a commonplace assumption (especially among medical professionals) that people with physical disabilities cannot cycle, despite it being significantly easier than walking or wheelchair propulsion for many disabled people http://www.wheelsforwellbeing.org.uk/. However, ethical ‘self-assessment’ enabled me to position myself, my research participants and the value of the research within a critical social science and rights-based perspective which locates disability as a social identity rather than an individual vulnerability. However, this does not mean that I have avoided thinking clearly and carefully about the ethical protocols. I have taken time to consider the research, it’s potential impacts at the individual, social and policy levels, and to work to ensure that it is a positive and empowering experience for all those involved (including me). I have also developed my information, consent and researcher commitment forms in line with best practice in feminist and sensitive research (Byrne, 2000; Inckle, 2007; 2015).

Overall then, my experience suggests that my initial incredulous laughter at the thought of ethical self-assessment was misplaced. In an era of increasingly regimented ethical protocols which unilaterally apply limited, discipline-specific assumptions across the entire research community, and thereby curb the possibilities of who can conduct research, about which topics and with whom, then discipline-specific ethical self-assessment provides a new opportunity for contextualised ethical review. This kind of approach, coupled with a nuanced, reflexive approach to the development of ethical competencies could offer a significant way forward for ethical review in the social sciences.

References

Byrne, A (2000) Researching One An-Other, pp.140-166 in A Byrne and R Lentin (eds) (Re)Searching Women: Feminist Research Methods in the Social Sciences in Ireland. Dublin: Institute of Public Administration.

Inckle, K (2015) Promises, Promises… Lessons in Research Ethics from the Belfast Project and ‘The Rape Tape’ Case, Sociological Research Online 20(1): 6 http://www.socresonline.org.uk/20/1/6.html

Inckle, K (2007) Writing on the Body? Thinking Through Gendered Embodiment and Marked Flesh. Newcastle-upon-Tyne: Cambridge Scholars Publishing

Oakley, A (1981) Interviewing Women: A Contradiction in Terms, pp.30-61 in H Roberts (ed) Doing Feminist Research. London: Routledge.

Contributor
Dr Kay Inckle
Course Convener in Sociology
LSE
Blog/Bio | K.A.Inckle@lse.ac.uk

This post may be cited as:
Inckle K. (2017, 24 April) Ethical Self-Assessment: Excellence in Reflexivity or Corporatisation Gone Mad?. Research Ethics Monthly. Retrieved from: https://ahrecs.com/human-research-ethics/ethical-self-assessment-excellence-reflexivity-corporatisation-gone-mad

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